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And now….Ancestry Health

I was startled to see Ancestry enter the health arena, given the problems that 23andMe has had with federal regulation, but after I took a look at Ancestry Health, I realized it’s nothing at all like the 23andMe health information. 23andMe provided you with health information based on your DNA test. Ancestry Health does not. In fact, Ancestry Health only does two things.

Ancestry Health gathers your health information to tie to your tree and DNA information. This process requests your “informed consent” to provide that information to others. Ancestry didn’t say this, but for example, sold to Big Pharm. This is what Ancestry Health does for Ancestry.

Ancestry Health provides, in picture (tree) and summary format, the health information you input for you and your family. That’s what Ancestry Health does for you.

What benefit is that, to you, you ask? I was asking the same thing. Let’s take a look.

Here are the intro screens.

If you click “get started,” the next thing you see is a consent form.

You are required to click the “I have read and accept the Terms and Conditions” box, but the “Informed Consent” box, which is optional, is strategically located above the Terms and Conditions box.

The “informed consent” is the portion that gives Ancestry permission to pretty much do anything with your information. At least, as a consumer, that’s my interpretation.

Now, I’m not a lawyer, and hopefully Judy Russell, The Legal Genealogist, will take a look at this and have some commentary.

If you’re even considering participating in Ancestry Health, please, PLEASE read both the Terms and Conditions and the Privacy Policy, in whole.

Why, because this is what the Ancestry Health site says:

“By using the Service you consent to the collection, use, storage, and disclosure of personal information by AncestryHealth in accordance with this Privacy Statement.”

And from the Ancestry Health Privacy Statement (emphasis is mine):

“Subject to the restrictions described in this Privacy Statement and applicable law, we may use personal information for any reasonable purpose related to AncestryHealth’s business, including without limitation to provide the Service to you, to communicate with you, to provide you information about products and services offered by AncestryHealth and/or any of AncestryHealth’s affiliates, subsidiaries, and other related companies (the “Ancestry Group”), to respond to your requests, to update our product offerings, to improve the content and user experience on the Health Website, to let you know about offers of interest from AncestryHealth, the Ancestry Group, or other parties we think may be of interest to you, and to prepare and perform demographic, benchmarking, advertising, marketing, and promotional studies.”

You need to know what you are consenting to. Read all of the documents in their entirety, BEFOREyou do this.

The link to the terms and conditions and their privacy statement is at the bottom of each page.

As far as I’m concerned, these paragraphs from Terms and Conditions are fairly telling.

I decided to proceed, WITHOUT, I repeat, WITHOUTsigning the informed consent to see what happened next. The only reason I proceeded is because I can’t very well write this article without proceeding. Please do not interpret the fact that I participated in the Ancestry Health beta as an endorsement. It isn’t.

I signed on with my Ancestry account name and ID and Ancestry asked me which of my trees I would like to import?

I imported my mini-tree. The next question was about my height, weight, smoking history and exercise. They’ve blown it right there….asking people about their weight and expecting an honest response.

Next, you select from conditions to associate with your health.

The next step asks about your ethnicity….and of course plugs their DNA test.

Clicking next takes you to the health condition screen where you associate conditions with the family members in your tree.

I selected Vascular Disease since my mother died of a stroke and then selected Cancer since my grandfather died of cancer.

Then I selected Heart Conditions since my father had angina and both of my grandmother’s had heart issues. Actually everyone in this tree, except for me, had heart issues because they are all dead now…but I’m thinking that’s not what Ancestry meant.

This is what you receive at the end. In your Family Health Tree, your family members are colored with their health conditions. I already knew this. In fact, I just input that information.

Ancestry also shows you a summary of what you’ve input, which is downloadable.

You can then click on the condition to see what they call the “Family History Effect.”

That’s what you get. Really, nothing that you didn’t already know. After all, you just entered that information.

What did Ancestry get? Health, ethnicity and lifestyle information for you and your family to sell along with your DNA information, if you signed the informed consent. If you don’t sign the informed consent, your information can still be utilized, just without your identity attached, per the verbiage in their terms and conditions, privacy statement and informed consent documents.

A few minutes after entering my information, I received this e-mail from Ancestry.

Whoever thought a few years ago when genetic genealogy began that Ancestry would develop such a personal interest in our health and well-being.

______________________________________________________________

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63 thoughts on “And now….Ancestry Health”

Personally i think it would be very dangerous to consent to this format, not only will Ancestry profit, probably quite well from this through big Pharma, but the information will also prove to be extremely useful to Insurance companies who may as a result increase your premiums or possibly even refuse to insure you, this is tantamount to consenting to your Doctor handing over all your medical information and as far as i am concerned Ancestry Health should be avoided at all costs, if they want my medical information they can buy it, at my price.

Gosh, just a few short years ago ancestry was the best research source. Now? Not so much. They went from best in show to use at your own risk. I WAS planning to spend money there again next fall. Am I now? NO.

Thanks for posting this. It will be interesting to see how Ancestry will spin this and how they will advertise it. I wonder if they plan to link DNA results with the health information? I too hope that Judy Russell and maybe Blaine Bettinger comment on AncestryHealth and enlighten us on what consenting to this could lead to. Ancestry must dread your blog postings, Roberta!

Ken Chanine’s comments in the HuffPost last September indicated the direction this would all be going. Don’t forget that Ancestry hired a man with extensive experience in the pharmaceuticals industry to be their top executive for DNA work. I have the utmost respect for Dr. Chahine’s work, but I think Ancestry has jumped the shark on this one. How can they possibly reconcile this “Informed Consent” giveaway of extensive health information with their “Privacy” concerns stated as the reason for their refusal to provide analysis tools for AncestryDNA? [See http://goo.gl/Cs3NhY for the HuffPost profile of Dr. Chahine.]

The difference, and the reason 23/Me got slapped down by the FDA, was that they were sharing the results of genetic testing with those who bought the tests, and testing companies, who in numerous cases are charging hundreds to thousands of dollars for a single test included as one of 100 or more in 23/Me’s health conditions tests, put pressure on the FDA to shut that down. Heaven knows we are not competent enough to receive news that we have a mutation for celiac disease without a white coat sitting across the desk.

Ancestry, on the other hand, is asking *us* to tell them our health histories so they can sell it on to big Pharma, Insurers, banks, who can and do rate your mortgage based on health status – There’s a sucker born every minute apparently.

I remember back when Ancestry’s parent gave us space to put our family trees on-line free of charge, and promised they’d be freely available forever and ever amen. (Insert organ music). The Innerwebs was young and green, and genealogists were accustomed to playing by the rules of civil society, and were as green as the Innerwebs. “They” turned into Ancestry.com and *we* got ripped off.

I trust Ancestry.com as far as I could throw their CEO, and I’m under strict orders from the doctor not to pick up anything heavier than five pounds, which leaves the cat in a bit of a quandary since he’s too fat to jump into my lap. (Don’t fret, I got him an ottoman to use as a step, so he still gets lap time.)

So, as someone who works with the rare genetic disease community I say Ancestry can take a hike with their “Health History”. Or better yet, we should all go on and tell them all our ancestors lived to be 105 and died while skydiving, surfing the big waves at Maui, during a shot-drinking contest, or in a whorehouse brawl (especially the grannies). That would raise a few eyebrows.

There is also another page with general information about the condition, in this case, strokes, like “1 in 19 people die of strokes.” Then there is a list of risk factors, like smoking, and what one can do about the risk factor if it is modifiable – quit smoking. This is general information, not individual information other than you entered information that your family member had a stroke – which is why stroke is listed in the summary.

Thanks. It looks like they are searching the literature for relevant studies. The concept of relative risk is hard to get across. I may be biased, but I think 23andMe does a better job by incorporating average risk as well as relative risk. Nevertheless, AncestryHealth does give you some perspective.

I am getting really irritated at Ancestry’s take on what genealogy should be. I want old records, not the private health issues of people I might be slightly related to. How about adding more small town newspapers, better access to European records and other hard to find info sources. For the price they charge for World deluxe membership, they could give me more traditional resources and leave this “health” stuff to, let’s say, Health Professionals!

I was thinking all along all of your families health issuers they would just regurate back to you. A waste of time and money for you, but powerful information for Ancestry to use in whatever manner they see to make a profit off of your information. It’s a NO for me! Thanks Roberta.

This type of information could be put to so much better use. I inherited an autosomal dominant condition that is often not identified properly, but there are many treatments available once it is. Information and education about genetic disorders could be a real service.

Thanks for the heads up Roberta. I think they are a bunch who really think we are stupid. Certainly can not be trusted with a chromosome browser! Why would we be aware of what they are really doing? Big Pharma and insurance companies are the tip of the iceberg. Something else for them to sell. No part of it for me.

You just quoted me, without knowing it, ronjohn63. I’ve been preaching to my high school students for years that hanging your whole life out there on FB leaves you with no recourse when that “info” is used against you. They didn’t want to hear it, and apparently many adults don’t either. I use Ancestry.com for my needs, but carefully. If I pay for their service (or anyone else’s, for that matter,) I know what I’m getting up front. Ancestry.com isn’t a philanthropic society. So like any other “business” I contract with, I use it with caution and expect that making money is their prime motivation. It’s called Capitalism for a reason.

I’m curious how you discovered this new beta “Health” feature being offered by Ancestry? I have not seen any signs of it when I log onto my account.
Just yesterday, I complained about being invited to use the “new” format look they are offering. When I was unable to perform certain functions, their customer service rep. said it was still in the beta phase, and they looked forward to customers telling them what wasn’t working. I must have missed the disclaimer that informed me the “new” format was released premature, incomplete, and that I was a being used as a guinea pig to assist their IT people with the quirks. I was grateful to learn how to return to the “classic” look.

Sometimes Ancestry shoots themselves in the foot to the detriment of their paid membership.

Welp, I signed the agreement, but I find the whole thing very disturbing.

I actually liked what 23 and Me did with their results. I learned some very useful information from them, that I would not have without some very expensive testing through a physician.

This just feels like Ancestry just stole some information from me. Yes, I gave it to them. I don’t get anything in return, other than a few statistics I already knew. They can now sell my information to someone.

But Ancestry lost something today. Ancestry lost some of my respect. I don’t know if I can think of this company in the same way ever again. This feels like a ripoff. This feels like a con. This feels like a sleazy way to make money. This feels like something Monsanto would do.

I want to add on to my experience. I contacted Ancestry with a request to remove my informed consent. The wait to talk with someone was about 10 minutes. Then, there was a wait while she waited to get information on how to proceed. She said I was to email consent at Ancestry Health. com. Those email attempts have all failed to deliver. So, now I am on the phone, again, waiting to talk to support.

I spoke with a second support person at Ancestry, who also was unfamiliar with the situation of wanting to remove consent. I informed her of a “fix-it” message to me to call her in order for my emails to be recognized. She did not know how to do this. Instead, she provided me with this email address: Memberservices@AncestryHealth.com

I sent an email to them, explaining that I want my informed consent removed. It seems to me, it should not be so difficult to remove consent when given. One should be able to opt out at any time.

Apparently, this portion of the project was not given much care and consideration. Neither person I spoke with had any knowledge of how to proceed.

You’re right, Toni. I did give them my information. Now I’ve changed my mind and want to remove it. I’m still waiting for someone to respond to me. I am a paying customer. I got an email yesterday from memberservices@ancestryhealth.com, which says:

“Hi and sorry about the difficultly reaching us at that address. I will submit a request for your research consent to be updated so you will be opted out of participating in the research project.

Thanks
The AncestryHealth Team”

My interpretation of this – they are submitting a request that my consent be updated, but this is not a confirmation that this has been done. I am still waiting for that – as yet, I have not received it.

Just as there is no removing “unfortunate” pictures from Facebook (they’ve been removed from view, but those pictures of you in a wet tee-shirt and swilling beer with hard-bodied teens are still on Facebook’s computers) and no unjumping off a bridge, Ancestry will still have your information.

If someone shows up with a Court Order mandating them to hand over the data, they gladly will. All because you *knew* the consequences AND DID IT ANYWAY!!!

23andMe does have a facility to remove your consent from future studies and events, but that doesn’t remove your consent from anything in the past where your DNA and information has already been used. Obviously I can’t say about Ancestry, but the idea of removing informed consent is not entirely foreign.

You’ve pretty much beaten up on my for signing AncestryHealth’s informed consent with:

“You should lose respect in yourself.”

You’ve pretty much told me that any attempt on my part to remove/reverse my consent is unlikely with:

“Tough”

I think what you fail to recognize is that this is a beta project. AncestryHealth is putting their big toe into the water to find out the temperature. I still have not received any confirmation from them about removing my consent. They seem to be pretty hard to contact. The person I spoke to gave me an email address, which failed. Then a second person gave me an alternate address. That address has merely forwarded my request to the people involved. Those people have not contacted me. It has been two days.

My experience can be a lesson to other people. These are the things which can be written about in blogs (like Roberta’s blog). These are the kinds of things that can get written about in other articles. Ancestry is a brand. Up to now, it has been a trusted brand to me. I am beginning to have my doubts about Ancestry. This is the kind of thing that can hurt a brand.

Marilyn, Thank you for being brave enough to share your experience with others. I respect that greatly. Putting yourself ‘out there’ is always risky. I am hopeful that this article and your experience will help others not make the same mistake. I think all too often it’s too easy just to click, especially when we don’t have any negotiation opportunity – so it’s click or nothing. In doing so, we all too often sign up for something we really don’t want, or in this case, give away something we really don’t understand or see the value of. And of course, the corporations intentionally set things up like this, to lure their prey. And it works, most of the time. You’ve probably said most of the things to yourself that Ron said out loud – well, except for the “losing respect for yourself” part. We all learn from mistakes and that has nothing to do with self-respect. I bet you’ll never just click again. In reality, the organizations I lose respect for are the ones that engage in this sort of manipulative behavior. But in the end, I’m glad they show their true colors, just like the cheating husband…I’m glad it happened sooner than later – painful as it was. Better to know the truth and then one can act accordingly. Thanks again.

I just received an update by email from Ancestry Health – Member Services:

“Hi Marilyn – the request is being handled by the development team today. I’ll give you an update as soon as I get confirmation that it is complete. No information has been sold or shared outside of Ancestry and none of the information you added is publicly available (except by you when you login to your health account).

Just for clarification, for those who do give consent to share their data as part of the research project, the data is aggregated and no personally identifying information is included.
Thanks
Stacy
AncestryHealth”

So I give them my health and family members health info and then they just give me a summary of it? Ooooooo-kay. I could see it being somewhat helpful if other DNA matches also filled in their health info and you could see it (just the stuff like who had cancer, strokes, etc, not height and weight info) to see how much it runs in your family. But that is just in theory because why does a person really need to know that someone they just match with in DNA also had relatives who had a heart condition.

Any organization should think twice before buying this information. It comes from retroactive diagnosis of our ancestors after their death, by people who might have very limited medical knowledge — and that would be the kindest interpretation. What about people who decide to put in false information intentionally?

This is a counter-intuitive feature. Don’t feel like I need it. I chose Ancestry’s service because I wanted to GET information not GIVE information. Everyone knows that the most valuable DNA health information is one that gives users Disease risk, Pharmacogenetic information (best meds for your genes) and Epigenetics. Tools like Livewello and Promitheus give that much needed information. With that I could maybe I could use this new Ancestry feature to populate my tree.